Posts Tagged ‘chronic fatigue’

In my 11 years as a coach for people with chronic illnesses, and as someone who has a chronic illness himself, I have learned that having conversations is one of the best ways for us to make our lives better.

But in order for them to make our lives better, they need to be the right kinds of conversations, and they can’t be with just anyone. In fact, the conversations I’m referring to aren’t ones with another person.

At this point, you’re likely wondering just who or what I’m suggesting that you have a conversation with. My answer is: your organs that have been affected by your illness.

Now obviously, you can’t have verbal conversations with your organs. But you can ask them, again in a non-verbal way, what they want and what you can do for them.

When I have my clients do this, and when I do it myself, I have found that if after we ask we wait quietly, we almost always get an answer.

When a client of mine who, along with chronic fatigue, has digestive challenges asked her stomach what it wanted and how she could help it, the answer she got back was that it wanted attention, appreciation, and it wanted her to take better care of it by being more careful about what she ate.

Of course, the answer you get will depend on many factors, including what illness you have and which organs are affected.

One other conversation that both my clients and I have found helpful, and I think you will too, is a conversation with your illness. You can ask it what it wants you to know about why you have it, what if any life lessons it has for you, and what you can do to live better with it. If you do this, you will very likely be surprised at how much the answers you get help you to live a better life.

Please note: while these conversations with your organs and your illness can be very helpful, they are not intended to be used as a substitute for any medical care or treatments you are receiving.

With very few exceptions, everyone I’ve talked to who has a chronic illness (and I’ve talked to LOTS of people who do) has wondered why they got it. I have too. Many of them believe what I do: that one of the main factors that caused their illness, was having an unhappy and often traumatic childhood that included not getting nearly enough love from their parents or caretakers.

I believe there is a strong connection between our childhoods and our chronic illnesses for several reasons. The first is that the majority of the people with chronic illnesses I’ve coached over the past 10 years have told me that their childhoods were emotionally traumatic and that they didn’t feel very loved by one or both parents.

One recent client, whom I’ll call Lillian, is a good example. Neither of her parents was emotionally there for her when she was growing up, especially her father. And she’s had cancer – not once, but twice. She was diagnosed with lymphoma was she was seven years old. It responded to treatment, but she never fully recovered her health.

Then, 10 years ago, when she was 38, Lillian was diagnosed with leukemia. She had to undergo a bone marrow transplant. That cured the leukemia, but her body, including her immune system, were severely damaged and she hasn’t felt well or had what she considers to be a good day since. Is is just a coincidence that she didn’t get the love she needed (and still longs for) and that she has had cancer twice. I sure don’t think so.

The second reason I believe in that strong connection is because researchers have been finding more and more evidence that people who’ve had unhappy or stressful childhoods are much more likely to be diagnosed with chronic illnesses (and also chronic pain) as adults. The illnesses include fibromyalgia, chronic fatigue, diabetes, multiple sclerosis, and many others.

The third reason I believe in the connection between an unhappy childhood and developing a chronic illness is my own experience. As I’ve written elsewhere, I was diagnosed with Crohn’s disease when I was 47. I feel strongly that having an unhappy childhood was one of two main causes (for reasons I won’t go into here, I believe that the other main cause was my many mercury-amalgam fillings).

There is one more reason I think there is a connection between having an unhappy childhood and developing a chronic illness. It comes partly from what I have learned and understood about my clients, but more than that it comes from my own life. As a child, I developed a serious chronic illness that resembled polio, but wasn’t. I eventually recovered from it.

In a therapy session many years later, I had the profound but completely unexpected realization that I had deliberately but subconsciously acquired the illness to get attention and love from my parents that I desperately wanted and needed, but wasn’t getting.

I wish I knew and could explain how I acquired the illness, but I don’t and can’t. But more than enough corroborating evidence came along with the realization to convince me that, beyond a reasonable doubt, it was true.

If, after reading what I’ve written, you suspect that you may have unconsciously decided to acquire a serious chronic illness, please don’t blame or criticize yourself for having done so. If you did that, it was because, like me, you had an unmet need. What you needed and didn’t get then was lots of compassion and understanding, and what you need and deserve now is lots of compassion and understanding. Please give them to yourself.

You also need lots of compassion and understanding if you had an unhappy childhood and there is a connection between it and the chronic illness you have now. Please give them to yourself – as much as you possibly can. Doing so helps bring about physical and emotional healing.

Those of us who live with chronic illnesses can have many difficulties to deal with because of those illnesses. But I have found, from my own life and from coaching and talking with others with chronic illnesses, that there are five main illness-related challenges, and most of us have to contend with one or more of them. These challenges aren’t independent of each other. On the contrary, they are all connected and inter-related. They are: chronic pain, chronic fatigue, lack of money, depression, and finding meaning in our lives. In this post, I’m going to share three strategies for dealing with one of those challenges: chronic fatigue.

The suggestions I’m going to share with you are ones I wish I had known when my chronic illness (Crohn’s disease) was in an almost constant flare, instead of being in remission like it is now. I often suffered from severe fatigue, and at that time I only knew three strategies for dealing with it. They were to nap in my car during my lunch hour at work, to get as much rest as possible on the weekends to recover from the previous week and get as ready as I could for the next one, and to learn about all the standard and alternative treatments for my illness and try the ones that seemed like they might help (I often spent two hours a day doing research on the internet).

Those were pretty good strategies, but if I had that period of my life to live over again, I would add three more that I think would have helped a lot. They are:

1) Look for and think about small things I could to make my life better. For example, I could have made a list of movies I wanted to watch, including comedies to cheer me up and uplifting ones to give me hope, and then watched them (while resting in bed, if necessary).

2) Keep a gratitude journal. Gratitude has been shown to to improve people’s health and their outlook on life. In spite of having overwhelming fatigue (and many other difficult symptoms), I had a lot to be grateful for, including a roof over my head, food on the table, a bed to sleep on, and a whole lot more.

3) Give myself lots of self compassion and hugs because of how difficult my life was (instead of spending a lot of my time dwelling on how sick I was).

As I said, I wish I had known these strategies when my life was a overwhelming struggle because of chronic fatigue and my other symptoms. But I’m very glad that they’ve been very helpful for my clients and others I’ve shared them with, and I hope you will find them helpful too. And if you would like even more strategies, I invite you to get and read my How to Have a Chronic Illness – Without Letting Your Chronic Illness Have You report.

I send out bi-weekly tips for living well with a chronic illness to people who sign up for my free report, and for one of my October tips I wrote about a former client who had chronic fatigue syndrome. A woman wrote back to ask me to let my former client know about the book Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. I did that and I also got the book myself, and have just finished reading it.

In the book, the author recounts her family’s harrowing ordeal with Lyme disease that began after their 1993 move from New York City to a nice house next to the woods about 50 miles away.

I highly recommend this book, especially if you have or know someone who has Lyme disease, chronic fatigue syndrome, fibromyalgia, lupus, Parkinson’s disease, or amyotrophic lateral sclerosis (Lou Gehrig’s disease). The author makes a very convincing case that Lyme and other tick-born diseases are often misdiagnosed as one of those other illnesses.

The following excerpt was especially eye-opening for me: “Even the campus green at Brown University, surrounded by city streets near downtown Providence, had Lyme ticks: One friend sitting on the green had pulled a tick from her leg only to find, a short time later, an erythema migrans* in that very spot. She later tested positive for Lyme disease.”

I have a friend who was diagnosed with lupus not long after she attended Brown about 25 years ago, so I couldn’t help but wonder when I read those two sentences if my friend’s lupus and other health problems are actually due to Lyme disease. I sent my friend an email with a brief summary of the book. If she decides to be tested for Lyme, I will write about her diagnosis, treatments, and results in future posts.

As the author describes the devastating symptoms, the progress, and the setbacks she, her husband, and their two sons experienced from Lyme and other tick-born illnesses, she makes it strikingly clear how serious and complex these diseases are. But what made the ordeal many times worse for them and countless others was the turf wars that continue to rage within the medical community. They pitted doctor against doctor and doctors against government agencies, and resulted in some doctors whom patients felt were the only ones treating their illness effectively either stopping treating Lyme patients or risking losing their medical licenses.

The author was able to cure her Lyme disease, and her husband eventually recovered and stayed relatively well as long as he continued to take his medication. At the time Weintraub completed the book, one of her sons had recovered, been re-infected, and had recovered again, and the other was finally regaining his health after being gravely ill. She had much more to say, but I don’t want to spoil the ending for you.

* Erythema migrans is the name given to the rash, frequently target like, that often appears after a person is bitten by an infected tick.

Earlier this year I coached a young man who had chronic fatigue syndrome and some other health challenges that made his life very difficult. But he wasn’t a complainer and he did his best to get through each day.

As I got to know him, I learned that he was single and that he got tremendous satisfaction from working with at risk youths. He gave those kids lots and lots of love and support, including encouragement when they needed it and hugs when they needed them. Greg, as I’ll call him, was clearly a very caring young man.

I told Greg that I knew someone who could really use the love and support that he knew how to give. Out of curiosity and because he gets so much satisfaction helping others, Greg wanted to know who that person was. So I started describing him. I told Greg that the man I was talking about was a very giving person and very supportive of others and that he was in his late 20’s, and I provided some other information about him as well.

When I told Greg the person I was referring to had some serious health challenges, he realized I was talking about him. In an aha! moment, he also realized that he had been giving way more support and care to his at risk youth than he had to himself, that he wasn’t getting nearly as much support and care as he needed and that he could give them to himself as well as to at risk youth. And he started and continues to do that. How about you?